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Loss of Independence ?

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    Loss of Independence ?

    When I was told I could longer drive due to the short term paralysys / paraparesis in my legs, fine I bought a mobility scooter, now that the paralsys is effecting my arms and hands as well, there goes my independence, my beloved wife has to take me everywhere.
    I can no longer use my scooter as it presently is, as I would be unable to control it if an episode occured.

    Also I have a mobile / cell phone for emergencies now I cant use it and will have to have it modified to work on voice recognition.

    It seems to me that I take 1 step forward and 2 steps back.

    I am receiving help and support from paraquad, and without that I would be lost.

    Sorry if I sound negative, because I dont mean to I just need to talk to people who know what these diseases do to you because unless you have walked a day in my shoes you haven't got a clue.

    Most of the other problems caused by this disease are fairly well under control, and for that I am truly thankfull.

    Dorvad, do you have access to therapy (PT and OT) and a good physiatrist? While progression of your disease may not be stoppable, there are lots of things that can be done with equipment and therapy to help you maintain as much independence as possible.

    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.


      Mine is progressive too...and I do the same type of things that KLD suggested...excercises...etc. As soon as I found out it was progressive, I started participating in a ton of sports...I may not be the best at them...but it forces me to use those muscles and keep them strong for as long as I can.
      "Unless someone like you cares a whole awful lot nothing's going to get better. It's not." - Dr. Seuss


        Exercise intolerant

        See my post on this exercise bit in the Exercise forum. What is the cause of your SCI? AVM? Where?
        I am 6 months post. Near Lismore, NSW.


          SCI Nurse
          I am seeing the OT from Rehab Dept at the Hospital I go for Physio on Friday next and the OT from Paraquad is coming as well, hopefuly they will come up with some stategies to allow me to get some independence.
          Saw my own MD this morning and he is very happy with my general health, and he has given me the letter for my new Neurologist, the Rehab specialist in his letter to my MD mentions TIA' s or Dystonia as possible causes but I will wait until the new Neuro does his investigations etc.
          MY own MD thinks is just the subacute combined systems disease progressing is it can do.
          Was able to get into my pool today, wife supervising of course and it was great, MD says I am not allowed to go or do anything without a carer, dont like it but I understand his concern for my welfare.


            Well saw the OT from Hospital and the OT from Paraquad today, had a couple of episodes when they were here.
            Upshot of the meeting is they are going to look at a motorised wheelchair for me and it will probably be contolled by my head as my paralysis of my legs and arms is so unpredictable, they are also trying to get my phone set up hands free.

            I am still trying to come to terms with this as although I had anticipated this, for me it is a quantum leap,but I am desperate to have some form of independence.


              You know you can drive a car with your head, too? I know a few.
              TH 12, 43 years post